The late Nancy Baird, from Drongan took part in an interview for Aware in 2009 which allowed readers of our official newsletter to get a taste of life with MND from the viewpoint of a sufferer.

Nancy worked at a local hairdressers for 55 years when she began to feel the ‘drop foot’ symptoms associated with Amyotrophic Lateral Sclerosis (ALS), the most common form of MND. Her doctor told her it was a trapped nerve which is a frequent misdiagnosis made by health professionals. Two years later she arrived at Ayr Hospital, unconscious in an ambulance, and immediately put on a mechanical respirator.

Nancy’s niece, Helen, vividly remembers the phone call she received. “Nancy came on the phone and asked, can you come round I’m not feeling very well. She never complains about anything” said Helen. “I knew it was serious, so I got to the house immediately and phoned for an ambulance.” When Nancy arrived at the hospital the doctor told the family that she wasn’t stabilising and gave them the choice to switch the respirator off. Helen said, “I began shouting at her to open her eyes.” Nancy laughed, “I came round and wondered why she was shouting at me.” She spent seven weeks in hospital before she was told that she had MND.

Brave Nancy & Family

Nancy had a deep affection for Roland Preston, an intensive care nurse from Gartnavel Hospital. She said, “He made sure I got a respirator on loan, to take home when I left hospital. He pushed it through for me to get my own as soon as possible.” However, she had to wait a long time, like many people with MND in need of specialist equipment.

Nancy lived at home, with her son Ross and husband Alec, who were her carers. She used a respirator overnight and when she felt tired, but she still enjoyed an active lifestyle using her motorised wheelchair to go shopping and out for lunch. “We went caravanning for over 40 years”, said Alec. “Nancy was always the driver and our favourite breaks were in the Highlands. Ross comes with us these days and we use a modified Renault Kangoo to allow Nancy to take her wheelchair anywhere. Last year we went to the Black Isle and Oban on holiday.”

The financial and practical dilemmas associated with MND require facing a new approach to life. The family invested £6,000 on a specially made stairlift to give Nancy access to her bedroom and the toilet. However when it was installed it blocked her access to the house. Sadly a refund was not an option because the stairlift was specially made for their home, and it now sits in the shed outside. Luckily Nancy had a very resourceful and caring family. Her brother Andrew stayed a few doors away and brought in the papers and milk in the morning. She had nephews who helped build a wheelchair ramp at the front door and a modified shower downstairs.

Nancy once felt the benefit of the drug Riluzole, which is used to treat people with MND. She said, “I’m feeling OK just now, but I know that can all change. My family has been very supportive and I’m determined to still make the most of life.” At the time of writing Nancy and her family were well aware of what the future might bring, but it seemed that together with her close band of relatives, she was able to face it head on.